Home › Forums › Main Forum › Patient Stories › Dan’s Twinvir story
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7 December 2015 at 7:26 am #5366
Hi Dan,
I found Aveeno wash & Aveeno body moisturiser really good at helping to stop Riba rash when on Ifn + Ribavirin, so maybe that could help? You can just get now at supermarkets.
Also there’s a good cream called Caroline’s cream, for bad itchy skin, made by a mother whose child was covered in rashes & itchy skin, & she could find nothing that worked, this one is meant to really work. ( get it at chemists)
Hope this might help.
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results….pending….
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!7 December 2015 at 7:45 am #5369Oh yeah! Just googled Aveeno and contains oatmeal. We switched to an oatmeal soap as well while I was Pegging. Helped a lot. Still use which was why I forgot about it.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
7 December 2015 at 12:05 pm #5383GAJ
How is your pumping sensation? Can you describe it? I want to compare with that of myself.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured7 December 2015 at 1:04 pm #5392Hi Enkel,
Well, not really a pumping sensation as such, more a feeling of adrenaline/amphetamine. Like excited, inflated chest effect and wanting to rush around doing things.
That is why I asked Dan what he meant. Is your similar? It sounds a bit different but always hard to put physical feelings into words.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
7 December 2015 at 1:07 pm #5393A bit diffrent mine, when you stay sitting do you have the feeling to get up?
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured7 December 2015 at 1:12 pm #5394Yes, want to get up, rush around but nothing to do. So sit back down, then want to get up again. Getting more use to it now.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
7 December 2015 at 1:15 pm #5395This was exactly what i had in the beginning then that evolved in other symptoms. When i was sitting wanting to get up and when getting up feeling tired soon and wanted to sit again. Is this?
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured7 December 2015 at 1:32 pm #5397Sounds a bit similar although tiredness is just my normal feeling from when I do too much. I’m three weeks in now and don’t seem to notice as much so either it has lessened or I’m just getting more use to it now.
What other symptoms?
G
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
7 December 2015 at 4:27 pm #5420Thank you for your advice guys. I will Google oatmeal soap and Caroline’s cream.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND7 December 2015 at 8:57 pm #5434Not sure how my NHS Hepatoligist will react on Wednesday if I tell him, that I already started tx with generics.
I hope that he will be supportive and not going to kick me out from the clinic.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND7 December 2015 at 9:10 pm #5435Dan,
Show him the prescription of Dr James and this video https://au.tv.yahoo.com/sunrise/video/watch/30286645/australias-own-dallas-buyers-club-initiative/#page1
He is not better than Dr James.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured7 December 2015 at 9:58 pm #5436Hi Dan, Good luck Wednesday. Re skin, be sure that any moisturiser is 100 % organic. Make sure you wash in organic bath/shower fel then moIsturise immediately after bath. Non-Toxic washing power for sheets, keep away from man-made fibres and wool. keep away from E45 – it contains Lanolin and builds up on the skin after a few days and causes more irritation. Try to get oil-free products. They recommend them to people with dry skin, but oil is irritating.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC8 December 2015 at 2:05 am #5454That is a very good video and shows the same Twinvir box I have. I’ll try to show this video and take an empty box with me.
LG thanks for your advice. At the moment the face skin is the worst. Anything I put on it, irritates the skin few minutes/ hours later. I just need to find the way to control it .
On the other side, when I itch, all other symptoms become secondary for a bit.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND8 December 2015 at 2:51 am #5456O,I hate that, once the skin is irritated just anything will make it worse! You need to stop the cycle.
I have used a very mild over counter cortisone cream (not gel) before now, just to calm it down initially. but they don’t advise that for face as it can make the skin thinner apparently, but a teeny weeny spot may not harm. Also, not sure what the score is re Cortizone on tx so you’d better check.The best results would happen like this : Bathe with a cotton pad soaked in luke warm water and a couple of drops of organic lavender oil (in the water), don’t rub skin, just hold pad on skin avoiding getting in eyes. Then moisturise immediately you stop, don’t dry skin with anything, or just pat dry, don’t rub dry. Only use a tiny amount of moisturiser, too much can clog the skin and can even cause it to become infected. At the same time, I would take a tiny amount of anti-histamine (ask if ok on tx) like Piriton, literally a crumbs worth, all this before bed. Don’t let skin get hot or sweaty. Repeat on and off all day.
This is the only thing that ever really helped me with face. I very rarely get it now, except on right hand fingers, if hands get hot at night while sleeping, it can flare up. Avoid animal fur, dust and toxic household stuff such as washing-up liquid or polish etc, wash hands often. strangely, the good quality lavender oil really helps. I also put a few drops on pillow at night, it calms mood and helps sleep. Make sure your pillow case isn’t itchy or washed in stuff with chemicals in, also check laudry conditioners. same with face towel. Sleep without central heating on and window slightly open, even if it means extra blanket. Don’t keep touching face with hands, keep hair off face and don’t use a chemical shampoo, avoid hair gels etc too. Hope this helps, it works for me.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC8 December 2015 at 3:05 am #5462That’s good advise London Girl.
Not sure where Dan lives, but here in Sydney there are some shops dedicated to all organic products.I like using their protection from mozzie products & cleaning products.
They work well.Can’t handle the thought of spraying toxic Deet all over me to keep mozzies at bay. hmy:
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results….pending….
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!! -
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